Let’s help Allison get a new wheelchair & ramp!

Meet my cousin and first best friend Allison Kristie. My name is Tiffany and I’d like to share with you her story, journey, and incredible strength.

In 2019, Allison made the difficult and brave decision to amputate her right leg below the knee after years of pain resulting from a car accident, which also caused damage to her brain. Since then, she’s been through the ups and downs of different prosthetics, infections, more surgeries, and travel to UCLA for all of these things.

If this was where Allison’s challenges ended, that would be more than enough for most to take on, but what we now know is, it was only the beginning of a life-threatening new chapter for her. During the amputation process, additional surgeries, and not recovering as expected by the medical staff, Allison was diagnosed with a rare genetic blood disease, Alkaptonuria (AKU) she was born with, but didn’t know she had until going through the amputation process. I’ll let you read how Allison told us in her own words:

“Hi, everyone.

I wanted to take this time to be able to write this out, it's lengthy, to let people know the things that I've been battling over the last few years. I have a rare genetic blood disease, Alkaptonuria or AKU that I was born with and didn't realize until I was amputated.

Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition, which can cause significant damage to the bones, cartilage, soft muscles and tissues of those affected.

AKU stops patients’ bodies from breaking down a chemical called homogentisic acid (HGA) which the body naturally produces during the digestion of food. Due to this, HGA builds up in the body and, over time, leads to black and brittle bones and cartilage, and early onset osteoarthritis. The build-up of HGA in the body can also lead to other, sometimes more serious health complications.

If two people carry the faulty gene (have one faulty gene and one normal gene), their child has a 25% chance of developing AKU.

And I'm that 25%.

My geneticist is setting up a team of people who will care for me. This may require me to travel somewhere in the US. The UK are specialist in this, so my doctor will be reaching out to them for maybe a clinical trial.

There is no cure and currently the FDA hasn't approved the drug that slows the progression, so I may not be able to get it here or afford it.

I started seeing some of the symptoms when I was in my late twenties but didn't really know what was going on except that I was starting to get Osteoarthritis in my back, and my neck. I also started having some problems with my teeth. I had a horrible battle with gallbladder and kidney stones that we so big I went into liver failure. It's already turned parts of my body purple including spots on my eyes.

I want to be an advocate for this disease and help people who may be saying "hey, why the heck are my ears purple." My family, please let me know if you have any symptoms.

Thanks for listening, this is a long story.”

It’s a lot.

This is where we can help Allison. We are praying and have faith Allison will eventually get chosen for this AKU medical trial, starting in UCLA, but ultimately traveling to the UK for whatever period that will be, possibly permanently, as this is a very aggressive and progressive disease with no cure.

What will help Allison immediately is a new wheelchair and ramp to get through what lies ahead and we’re asking for your help now. Allison lives with her Mother Sharon and is on Medicare. The only wheelchair provided by Medicare is a heavy duty bariatric wheelchair which is too large, too wide, and too heavy for Allison to pick up without her prosthetic, which she cannot wear most of the time. She needs Ridig wheelchair, custom made to fit her body and lightweight enough to get in and out of the car without a prosthetic. This would simply give her freedom when she can't wear her leg. Along with the need for a wheelchair is a ramp to access and leave the home without stairs and crutches.

These are things most of us take for granted, but Allison sees these things as luxuries. I’m inviting you to bless her with the gift of mobility while she takes on the challenges ahead. She’s so worth it and loved.

Thank you for listening to her story and joining our family in supporting Allison on this journey and being a part of her incredible story of strength and determination to be the miracle we all know she is.